A Acromegaly anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Acromegaly. You're not alone.
28
People

I have Acromegaly and am 41. I was diagnosed in May 2008. I have had transphenoidal surgery in Sept 08. My IGF-1 levels are in the 900s and remain unchanged since surgery. I will be having 2nd surgery and possible radiotherapy.

So im pretty sure i have acromegaly, i have all the symptoms and everything.
Every day i think about my disease nonstop, i cant focus in life, or school. Im starting to fail in college. Its really getting to me.
Like i used to loved & people wanted to be friend cus i was funny...

I was diagnosed in 1983 at the age of 21. I was diagnosed with an extremely large pituitary tumor (tennis ball sized). First had a transphenoidal resection of the tumor. A few hours after the surgery I developed hydroencyphalitus and had another surgery to implant v.p. shunts...

I'm 46 years old I have Acromegaly & I have had it for 25 years. When I was 22 years old I could were a size 12 shoe now I ware a size 18 7e shoe. My hands are alot bigger as well. It has been hard dealing with this as I found out that I have Acromegaly 2 years ago. I took it...

I have acromegaly ....I began to notice the physical changes when i was about 14 years old.and was diagnosed at age 21. I am now 55 years old . I has someItimes been very difficult to be me. I have lived a very hard life and still i am usually happy. i do not know why...

I was diagnosed by an emergency room doctor in 1998 at the age of 28. I had spent ten years in the military by this time and had a total of 8 physicals, with not one question about my appearance. I had surgery to remove tumor 1 month after diagnosis, and Gamma Knife...

I am not sure how to even start. There is such an anguish in my soul that I am letting this concern rule over my emotions, psyche, my work, and my life. It feels awful when you feel half woman, or maybe even not half. The masculization of my hands, jaws, ribs (thickness), just...

Hi i just find out that my 14 year old daughter has Acromegaly and i am in shock, i started noticing that her hands and feet were growing too much. so i took her to the doctor, and they told me that she was out of range, i am destroyed inside, and out i have gotten sick myself...

MY SON WAS DIAGNOSED AT AGE 18, AT AGE 17 HIS EYE BECAME IMMOBILE AND WE WERE TOLD HE HAD PINK EYE! WE TOOK HIM TO THE ER AND HE WAS LATER SENT TO NEUROLOGIST AND MRI SHOWED A HUGH PITUITARY TUMOR SO LARGE THAT IT HAD GROWN IN TO THE CAVENOUS SINUS. IT WAS PRESSING ON OPTIC...

I was just diagnosed with a pituatary tumor secreting growth hormone and pitocin. Everything is changing in my body phyically and I'm in a ton of pain. I have carpal tunnel in both hands and can't work. I'm exhausted and feeling gross...new shoe size, crazy...

I am canadian so the one I use is http://www.true-2-me.com/.
Another good resource is http://acromegalycommunity.com/
I suggest you check out these groups, they are really helpful!
All the best to you all :)
R.C